The California Legislative Blue Ribbon Commission on Autism

Autism Spectrum Disorders: A Public Health Crisis National Statistics on ASD.
ASD economic impact of autism is over $90 billion annually now affects 1 in 150 children.
ASD now affects 1 in 94 boys,
A child is diagnosed once every 20 minutes,
There are over 24,000 new cases diagnosed annually,
ASD is more prevalent that juvenile diabetes, childhood cancer & pediatric AIDS combined.
ASD is fastest growing serious developmental disability,
There are almost 2 million cases of ASD.

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The California Legislative Blue Ribbon Commission on Autism
Autism Spectrum Disorders: A Public Health Crisis
National Statistics on ASD
• • • • • • • • ASD now affects 1 in 150 children ASD now affects 1 in 94 boys A child is diagnosed once every 20 minutes There are over 24,000 new cases diagnosed annually ASD is more prevalent that juvenile diabetes, childhood cancer & pediatric AIDS combined. ASD is fastest growing serious developmental disability There are almost 2 million cases of ASD The economic impact of autism is over $90 billion annually
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The California Legislative Blue Ribbon Commission on Autism
Autism Spectrum Disorders: A Public Health Crisis
California Statistics on ASD
Dept. of Developmental Services & Regional Centers • Caseload increased 634% from 1987 to 2002 • Currently there are almost 35,000 consumers with ASD • 84% are under the age of 22 years • Annual net increase of 3,200 cases of ASD • ASD now represents almost two-thirds of all new cases • Currently there are more cases of ASD than of Cerebral Palsy • Regional Centers probably serve only about 20% of ASD
School districts
• • • • Almost 35,000 students with ASD in special education Most districts have doubled ASD students in just the past 4 years Proportion of students with ASD in special education has increased >400% in past 9years There has been >1000% increase in ASD students K-12 during past 12 years
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The California Legislative Blue Ribbon Commission on Autism
• • Legislation (Sen. Perata) enacted 2005; Unanimous & bipartisan support Autism Commission Goals ~ identify & close gaps: – Early identification & intervention – Education & continuous treatment – The “aging out” of children Commission’s Three Task Forces Identify existing problems & gaps Review potential strategies Provide specific recommendations Task Forces Reports (March 1, 2007) Statewide Townhall Meetings Final Report to Governor & Legislature (September 2007) Legislation extends Commission to Nov. 2008
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Web site: senweb03.senate.ca.gov
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The California Legislative Blue Ribbon Commission on Autism
Factors & Considerations:
• Consumers, parents, & families as well as individuals working in the field must be involved The state should have a clear role and responsibility to address these issues The solutions should be clearly identified The solutions should be reasonable & feasible to implement. The solutions should have outcomes that can be monitored & measured The solutions should have the potential to effect broad “systems change”
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The Autism Commission’s Report to the Governor & Legislature: “An Opportunity to Achieve Real Change for Californians with Autism Spectrum Disorders”
Table of Contents • • • • • • • Building Models of Integrated, Comprehensive Services for Early Identification & Intervention Ensuring Appropriate and Equitable Coverage for ASD by Private Health Plans & Insurers The ASD Public Health Crisis: Improving Access to Services & Navigating Complex Systems of Care Preparing Teachers & Other School-Based Personnel to Educate Children with ASD Resolving Service Disputes Effectively & Equitably Designing New Employment & Housing Strategies for Individuals with ASD Increasing Awareness and Knowledge of ASD among Law Enforcement Officers & Other First Responders Conclusions & Next Steps
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web site: senweb03.senate.ca.gov
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Building Models of Integrated, Comprehensive Services for Early Identification & Intervention
Findings
• • • • • Many children with ASD are identified late in childhood or missed altogether Many children diagnosed with ASD do not receive timely & appropriate intensive interventions. Existing systems of care often do not collaborate The medical system is overwhelmed, under-funded, and ill prepared & often lacks linkages to other systems of care Families often face a crisis when children with ASD reach age three and transition regional centers to school districts
Policy Recommendations
1. Establish a demonstration project at multiple sites:
a. Expand early identification programs (focus on socio-economically distressed & rural areas) b. Ensure access to intervention c. Improve communication and sharing of information d. Provide supports to families and caregivers e. Improve communication between the “medical home” and families. f. Expand resources & training for health care professionals g. Provide a seamless system for service delivery between regional centers and school districts
2. Enact state legislation to expand developmental screening, including for ASD, for children from birth to five years of age
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Ensuring Appropriate and Equitable Coverage for ASD by Private Health Plans & Insurers
Findings
• • • • • Coverage of health care, behavioral, and psychotherapeutic services for ASD is limited, inconsistent or excluded altogether The roles and responsibilities of health plans and insurers for ASD services are not well defined Frequently there is lack of consensus about the “medical necessity” of services for individuals with ASD When health plans and insurers contract (“carve out”) behavioral health services, there is often fragmentation and/or denial of services, leaving families with lost time and no services Health plans and insurers do not consistently provide access to professionals with adequate training and expertise in ASD
Policy Recommendations
• The state of California should adopt policies and practices to ensure the following: a. That all health plans and insurers treat ASD as a brain-based & medical disorder
b. That all health plans and insurers provide a full range of services for ASD c. That all health plans and insurers may not use the diagnosis of ASD as an exclusionary clause
2. The state of California should establish an Autism Professional Advisory Council for the purpose of
adopting evidence-based “best practices” guidelines for the evaluation & treatment of ASD health plans and insurers comply with those guidelines
3. Once these guidelines are adopted, California should adopt policies and procedures to ensure that all
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The ASD Public Health Crisis: Improving Access to Services and Navigating Complex Systems of Care
Findings
• • • • • ASD is a public health problem, yet the state lacks a comprehensive public health initiative and infrastructure Many Californians are not adequately informed about ASD Individuals with ASD and their families have difficulty in accessing & navigating programs and services Programs and services that serve individuals with ASD typically lack appropriate data management and information sharing systems Families in underserved populations face tremendous challenges in accessing services
Policy Recommendations
8. • Require the state of California to establish an ASD Public Health Initiative in order to promote greater public awareness and knowledge of ASD Require the California Department of Public Health to establish a statewide system, infrastructure, and Office of ASD to assist consumers in accessing and navigating programs and services for ASD Require the California Department of Public Health to establish a statewide voluntary registry for individuals with ASD The state of California should fund training, technical assistance, and other support to communitybased resource centers so they can inform, train, assist, and empower families, especially those in underserved communities 10
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Preparing Teachers and Other School-Based Personnel to Educate Children with ASD Findings
• • • • • • • There is a compelling need to increase the number of well trained special education and regular education teachers, speech therapists, occupational therapists, counselors, and other specialists Current practices must be reviewed to ensure that teacher training and preparation are appropriate and applicable There are an insufficient number of well-trained paraprofessionals and school aides to assist teachers Teachers report that they need more resources and supports School administrators and principals require additional training and preparation Teachers need expanded opportunities for pre-service and in-service training Establish an alternative credentialing program with specialized training on ASD for prospective special education teachers
a. Increase the number of well trained and qualified teachers b. Prepare teachers to educate children with ASD
Policy Recommendations
12. Direct the California Department of Education to establish an ASD Multidisciplinary Educational Training Team Program:
a. Establish the professional competencies, resources, curricula b. Establish strategies, trainings, and other services for school-based c. Promote collaboration in the sharing of information between local educational systems & resources personnel education agencies and other
13. Establish a model program to provide specialized training and career-ladder opportunities for teacher aides and other paraprofessionals 11
Resolving Service Disputes Effectively and Equitably Findings
• • Consumers and their families may disagree with local education agencies and/or regional centers and other systems of care about the type and quantity of services The current system that addresses conflict resolution between consumers and their families and local education agencies and/or regional centers is variable in its effectiveness across the state Some disputes that are appealed to the state for resolution can be very costly, frustrating, and time consuming, and create delays in the delivery of services. Serious disputes can also divert resources from services The resolutions of some disputes are unsatisfactory & perceived to be inequitable to consumers and their families There is inadequate information about the range of disputes that are resolved at the state and local levels There is inadequate information about the range of possible barriers that may preclude consumers and their families from pursuing an appropriate and effective dispute resolution process
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Policy Recommendations
• Expand the development and broad implementation of effective models for dispute resolution to empower
families at the negotiation table with local education agencies
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Direct the state of California to provide a comprehensive and independent review of the process for resolving disputes at the state and local levels Direct DDS & CDE to collect information from regional centers and local education agencies 12 about their legal costs related to dispute resolution and litigation involving persons with ASD
Designing New Employment & Housing Strategies for Individuals with ASD
Findings
• • • • • Within the next few years a veritable “tsunami” of young people with ASD will enter adulthood and transition into the community There are very few programs designed to meet the needs of these individuals in the areas of specialized employment and housing There is a lack of effective models that address the career technical educational (vocational) needs of individuals with ASD who require intensive supports and assistance Although new initiatives have begun to expand self-directed service delivery models, there are major gaps within the private and public employment sector There are few, if any, specialized services designed to meet the needs of higher functioning adolescents and adults with ASD to enable them to develop vocational skills and to assist them in finding productive career pathways
Policy Recommendations:
9. Direct the California Community Colleges, in collaboration with other appropriate public and non-public partners, to expand programs designed for career training of people with ASD. 10. Direct the California Department of Education, in collaboration with other appropriate public and non-public partners, to establish a demonstration project at multiple sites that will serve as a career technical educational pathway, starting in middle school, for students with ASD who require intensive supports and assistance. 11. Endorse the efforts of the State Council on Developmental Disabilities in implementing the recommendations of Senate Bill 1270 (Chesbro; 2006) by promoting innovative career training programs for persons with ASD 12. Enact a state housing financing program designed to add financial support and assistance to local housing initiatives that bring together families, regional centers, and other community organizations for the development of specialized housing for the ASD population. 13. Create a model for housing and support for persons with ASD that treats the individual with respect and dignity, and provides a range of opportunities for employment and leisure activities.
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Increasing Awareness and Knowledge of ASD among Law Enforcement Officers & Other First Responders
Findings
• • • • There are reports of devastating incidents involving persons with ASD Law enforcement & other first responders often lack fundamental understanding and training related to ASD The ASD population growing into adulthood has a need to know what to do when victimized Courts lack an awareness of persons with ASD in terms of their accessing the judicial system in all capacities
Goal
Assure full integration of persons with ASD into community life in California by preparing and educating first responders, the judicial system, and the persons themselves on this aspect of their functioning in community life
Policy Recommendations
13. Direct the Peace Officer Standards and Training Commission to develop an ASD training module (i.e., DVD-based technology) and make it widely available to peace officers and first responders 14. Direct the Department of Developmental Services and the Judicial Council to initiate training for persons with ASD, as well as for allied public agencies, in accessing and participating in the judicial system 14
Conclusions and Future Considerations
Comprehensive planning across diverse constituents & communities Economic factors & fiscal analysis Consider key "can do now" recommendations & programs that could be implemented even with a restrictive budget climate such as:
    Early Identification, Screening, And Referral Coordination between various state & local agencies Surplus State Property And Re-investment Policy Public Health Advocacy, Education And Research
Professional and paraprofessional development Role of colleges and universities Role of Medi-Cal Program & federally funded programs such as EPSDT Importance of long term quality assurances & outcome measures
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Autism Legislative Package: 2007-2008 Session
 SB 527 – Early Identification of ASD (Sen. Steinberg)  SB 1475 – Pilot on Transitional Services for Early ASD Treatment (Sen. Torlakson)  SB 1563 – Health Insurance Coverage of ASD (Sen. Perata)  SB 1364 – Addressing the Public Health Crisis of ASD in California (Sen. Cedillo)  AB 2302 – Expanding Credentials for Teachers to Educate Students with ASD (Asm. Bass)  AB 1872 – State Clearinghouse for the Education of Students with ASD (Asm. Coto)  SB 1175 – Expansion of Housing for ASD (Sen. Steinberg)  SB 1531 – Police Officer Training on ASD (Sen. Correa)
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SB 527 – Early Identification of ASD
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(Sen. Steinberg)
Pilot project (three or more counties) established by DDS to establish best practices for the effective identification, assessment and treatment of children with ASD and other developmental delays DDS will establish an Autism Early Identification Advisory Committee (AEIAC) to implement innovative approaches, promote collaboration/communication, utilize new telehealth strategies, improve professional development, provide appropriate compensation, and increase public awareness DDS and AEIAC shall report to the Legislature by July 1, 2011 with an evaluation and recommendations based on the outcomes of the pilot project Will be funded by non-general fund sources
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SB 1475 – Pilot on Transitional Services for Early ASD
Treatment (Sen. Torlakson)
• Pilot project (three or more counties) by DDS to improve the transition of children with ASD as they transition at three years of age from regional centers to school districts This project shall identify and implement existing models of excellence and best practices that will establish seamless, coordinated, and integrated programs between regional centers and local school districts for the. identification, assessment and treatment of children with ASD and other developmental delays from birth to five years of age DDS shall establish an Early Autism Intervention and Transition Advisory Council that shall advise and assist the department in the pursuance of this legislation DDS and the Advisory Council shall provide a report and recommendations to the Legislature by June 1, 2012 Will be funded by non-general fund sources
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SB 1563 – Health Insurance Coverage of ASD (Sen. Perata)
• The Department of Managed Health Care and the Department of Insurance shall review guidelines and standards on the screening, diagnosis, assessment, and treatment of autism and other pervasive developmental disorders The Department of Managed Health Care and the Department of Insurance shall develop recommendations by October 1, 2009, on ensuring that health plans and insurers provide appropriate and equitable coverage for those illnesses These recommendations would be consistent with the protections provided under the existing California Mental Parity Law, which specifically identifies ASD and PDD.
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SB 1364 – Addressing the Public Health Crisis of
California (Sen. Cedillo)
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ASD in
Legislative intent to declare and establish that that ASD is a public health crisis within California. The California Department of Public Health (CDPH) has been established to improve access to health care services The Legislature directs the CDPH to establish an Autism Spectrum Disorders Advisory Council
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The Legislature directs CDHP to explore and provide recommendations on establishing a pilot project for a voluntary centralized registry of individuals with ASD
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AB 2302 – Expanding Credentials for Special Education
Teachers to Educate Students with ASD (Asm. Bass)
• Current law requires the Commission on Teacher Credentialing to report to the legislature and the Governor on the existing process and requirements for obtaining and special education credential and to recommend modification to enhance and expedite those procedures. Authorizes the holder of a level 1 education specialist credential who is authorized to provide instruction to individuals with mild and moderate disabilities to provide instruction to pupils with ASD
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AB 1872 – State Clearinghouse for the Education of
Students with ASD (Asm. Coto)
• Based on the recommendations of the Superintendent’s Autism Commission, CDE shall establish the California ASD Clearinghouse in order to provide evidence-based recommendations and practices for the education of pupils with ASD Information provided by the Clearinghouse shall be targeted to a broad range of audiences and shall include the following goals:
• Internet web site on evidence-based practices • Creating a “toolbox” of resources • Featuring demonstration projects
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Superintendent of Education shall convene a Clearinghouse Oversight Committee to represent major stakeholders for the education of pupils with ASD and to perform the following:
• • • • Establish criteria, guidelines, and processes Select anchor documents and resources Provide advice and recommendations Develop online rating systems and periodic surveys
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SB 1175 – Expansion of Housing for ASD (Sen. Steinberg)
• Expands the existing authority that has been granted to the Bay Area Housing Consortium Regional Centers to all regional centers throughout the state Authorizes all regional centers to enter into negotiations and contracts with certain specified entities for the payment of lease or leases on housing for regional center clients pursuant to the fulfillment of the following stipulations provided for in this act: • That the housing and services are integrated with individuals without disabilities • Approval of proposed ownership and management by regional center & DDS • Reasonable costs • Proposal includes approved transfer of property to non-profit approved by regional center Bill calls for review of contracts by California Housing Finance Agency and the Department of Housing and Community Development
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SB 1531 – Police Officer Training on ASD (Sen. Correa)
• The Commission on Peace Officer Standards and Training shall create and make available on DVD and electronically a course on how to recognize and interact with people with ASD This course will be made available to peace officers, firefighters, ambulance attendants and other emergency workers Possible voluntary identification card Possible voluntary electronic data base linked to DMV
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